New Jersey Bill Aims to Place Video Cameras in Group Homes

By Johanna Burke

In 2017, Billy Cray, a 33 year-old man with a developmental disability, was found dead in his bedroom in his New Jersey group home where he resided. There was no video to record what transpired, and no charges were ever made.

Last year, the Billy Cray Law, Bill NJ A4013, was introduced in the New Jersey Legislature which would provide certain requirements for the use of video cameras (without audio) in group homes for individuals with developmental disabilities who are 21 and over. This bill does not apply to children living in group homes under the age of 21.

This bill aims to strike an important balance between protecting people's privacy and protecting their overall well-being. It is intended to give residents, specifically those with severe behavioral issues, the opportunity to request the video cameras in their group home to ensure their safety and safe care by their staff. This bill will require group homes to install these cameras in common areas which includes entrances, living areas, dining areas, stairwells, and outdoor areas, at the request of their residents. It does not include bathroom areas.

Group home residents can request cameras in their private rooms as well. Any recordings in the group home's common areas are to be retained by the group home for a period of 45 days. Whenever a licensee who runs a group home receives notice about a complaint, allegation, or reported incident of abuse, neglect, or exploitation occurring within the group home, the licensee will forward this video to DDD (Division of Developmental Disabilities) for appropriate review, all the relevant footage recorded in the group home's common areas.

The summary and full text of the bill is below.

Johanna G. Burke Esq. is a special needs attorney and advocate based in Hawthorne, New Jersey. You can find her at www.jgburkelaw.com.

2020-2021 Regular Session

Bill Summary A4013

This bill would provide certain requirements in association with the use of electronic monitoring devices (EMDs) at group homes for individuals with developmental disabilities. An "EMD" is a camera or other electronic device that uses video, but not audio, recording capabilities to monitor the activities taking place in the area where the device is installed. The sponsor believes that it is imperative to enhance the quality of life of people with disabilities. Through this bill, the sponsor aims to make video monitoring technology more available in group home settings, taking great care to strike the important balance between protecting people's privacy and protecting their overall well-being. In so doing, the bill respects the rights of all individuals with intellectual or developmental disabilities, placing a premium on their individuality and recognizing that different people have different needs and preferences. Scope of Bill The term "group home" is defined more broadly in this bill than it is in other laws. Specifically, the term is defined to mean a living arrangement that is licensed by the Division of Developmental Disabilities (DDD) in the Department of Human Services (DHS), and is operated in a residence or residences leased or owned by a licensee; which living arrangement either provides the opportunity for multiple adults with developmental disabilities to live together in a home, sharing in chores and the overall management of the residence, or provides the opportunity for a single adult with developmental disabilities and extreme behavioral difficulties to live more independently while receiving full-time care, and in which on-site staff provides supervision, training, or assistance, in a variety of forms and intensity, as required to assist the individual or individuals as they move toward independence. "Group home" does not include a living arrangement that is dedicated for use by children with developmental disabilities. The revised definition used in the bill makes it clear that this term not only includes facilities that house multiple persons with developmental disabilities, but also includes facilities that, while commonly referred to as supervised apartments, provide group home-style living for a single person who has developmental disabilities and particularly severe behavioral difficulties that prevent them from being housed in a group home with other disabled persons. The bill would require group homes, as defined thereunder, to install EMDs in the common areas, upon the agreement, request, and uniform consent of all residents. "Common areas" is defined to include entrances, living areas, dining areas, stairwells, and outdoor areas, but not bathroom areas. The bill would additionally require group homes to permit the installation and use of EMDs in the private rooms of group home residents. The bill is not intended to impose new requirements on those group home providers who already engage in electronic monitoring pursuant to an internal organizational policy. As a result, the bill includes a provision that grandfathers-in and exempts from the bill's provisions those group homes that have already installed, and are utilizing, EMDs as of the bill's effective date. Specifically, the bill provides that any such group home: 1) may continue to use previously installed electronic monitoring devices in accordance with the organization's written policies; 2) will not be required to remove the devices from service; and 3) will not be required to comply with the bill's consent requirements in order to continue utilizing the devices. However, to the extent that a group home's common areas or private rooms do not contain EMDs on the bill's effective date, the licensee will be required to comply with the bill when installing new EMDs in such unmonitored areas. The bill is intended to give residents - particularly those with severe behavioral difficulties - the right to request electronic monitoring in the group home, as necessary to ensure their safe care. The bill is not intended to impose new electronic monitoring requirements on providers that already engage in electronic monitoring; and it is not intended to require other group home providers to commence electronic monitoring, except in those cases where the residents have requested and agreed to such monitoring. Installation and Use of EMDs in Common Areas Under the bill's provisions, any group home that does not have EMDs already installed in the group home's common areas will be required to install EMDs in those common areas, upon the collective request of the residents and the residents' authorized representatives, if all of the residents of the group home and their authorized representatives agree to have such EMDs installed and expressly consent to the installation and use of such devices. A licensee will be prohibited from requiring the group home's current residents to consent to the installation and use of EMDs in the common areas as a condition of their continued residency in the group home. A licensee operating a group home that does not have EMDs already installed in the common areas will be required: 1) within six months after the group home adopts an internal electronic monitoring policy pursuant to the bill's provisions, to take affirmative action to determine whether the residents of the group home and their authorized representatives want and consent to have EMDs installed and used in the group home's common areas; and 2) annually provide written notice to all residents and their authorized representatives informing them of their right to request the installation and use of EMDs in the group home's common areas. The bill would require any group home that installs and uses EMDs in its common areas, pursuant to the agreement, request, and consent of the residents, to: 1) require each person employed by the group home to provide express written consent to the use of the EMDs in the group home's common areas, as a condition of the person's employment; 2) ensure that a prominent written notice is posted at the entrance and exit doors to the home informing visitors that they will be subject to electronic video monitoring while present in the home; and 3) ensure that, in the future, the group home only allows residence by those individuals who consent to the ongoing use of EMDs in the group home's common areas. The EMDs installed in a group home's common areas are to be unobstructed and recording at all times. Each licensee will be required to inspect the devices, and document the results of each inspection, on a weekly basis. The DHS will further be required to annually conduct an on-site device inspection, as part of its broader group home inspection authority, in order to ensure that the EMDs installed in a group home's common areas are functioning properly, as required by the bill. An individual's refusal to consent to the use of EMDs in a group home's common areas may not be used as a basis to prevent the timely placement of the individual in appropriate housing without surveillance. The bill would specify that nothing in the provisions of section 3, regarding the installation of EMDs in a group home's common areas, may be deemed to prohibit a group home licensee from installing and utilizing EMDs in the group home's common areas, pursuant to the group home's internal policies, in cases where the group home's residents have not submitted a collective request for such monitoring. This bill is intended to require the placement of EMDs in common areas only in cases where group home residents have collectively requested the electronic monitoring of such common areas. It is not intended to limit a licensee's discretionary ability to install and utilize EMDs in the common areas, in accordance with the group home's internal policies, in the absence of a collective resident request. Installation and Use of EMDs in Private Rooms The bill would further require all group homes to permit EMDs to be installed and used, on a voluntary and noncompulsory basis, in the private rooms of residents. The installation and use of EMDs in a private single occupancy room may be done by the resident or the resident's authorized representative, at any time, following the resident's provision of written notice to the licensee of the resident's intent to engage in electronic monitoring of the private room. Such written notice is to be submitted to the licensee at least 15 days prior to installation of the devices in the private single occupancy room. Any resident, or the authorized representative thereof, who provides such a notice of intent to install EMDs in a private single occupancy room, or who so installs such devices, will be deemed to have implicitly consented to electronic monitoring of the private room. The installation and use of EMDs in a private double occupancy room may be effectuated only with the express written consent of the roommates of the resident who requested the monitoring, or of the roommates' authorized representatives, as the case may be. A roommate may place conditions on his or her consent to the use of EMDs within the double occupancy room, including conditions that require the EMDs to be pointed away from the consenting roommate at all times during operation, or at certain specified times. The roommate's consent to electronic monitoring, and any conditions on the roommate's consent, are to be memorialized in a formal electronic monitoring agreement that is executed between the consenting roommate and the resident who requested the monitoring, or between their authorized representatives, as appropriate. The licensee, either through its own activities or through a third-party's activities, will be required to ensure that the conditions established in the agreement are followed. If a resident's roommate or the roommate's authorized representative, as appropriate, refuses to consent to the installation and use of an EMD in a private double occupancy room, or if the licensee is unable to ensure compliance with the conditions on such installation and use that are imposed by a consenting roommate or the roommate's authorized representative, the licensee will be required, within a reasonable period of time, and to the extent practicable, to transfer the resident requesting the installation of the device to a different private room, in order to accommodate the resident's request for private monitoring. If a request for private monitoring cannot be accommodated, the resident or resident's authorized representative may notify the DDD, which will be required to make every reasonable attempt to timely transfer the resident to a group home that can accommodate the request. All of the costs associated with installation and maintenance of an EMD in a private room are to be paid by the resident who requested the monitoring, or by the authorized representative thereof. Additional Provisions The bill would require a group home licensee, when seeking to obtain consent from residents for electronic monitoring, to comply with best practices that apply to professional interactions or communications being undertaken with persons with developmental disabilities, and particularly, with those persons who have difficulty with communication or understanding. The DDD would be authorized to impose any additional consent or consent declination requirements that it deems to be necessary. Any recordings produced by an EMD in a group home's common areas are to be retained by the group home for a period of 45 days. Any consent forms, consent declination forms, and notice of intent forms submitted under the bill are to be retained by the group home for a period of time to be determined by the DDD. Within 180 days after the bill's effective date, each group home will be required to develop and submit to the division a written internal policy specifying the procedures and protocols that are to be used by program staff when installing and utilizing EMDs. The internal policy is to provide, amongst other things, that whenever a licensee receives notice about a complaint, allegation, or reported incident of abuse, neglect, or exploitation occurring within the group home, the licensee will forward to the DDD, for appropriate review, all potentially relevant footage recorded by EMDs in the group home's common areas. Any residential program that fails to comply with the bill's requirements will be subject to a penalty of $5,000 for the first offense and $10,000 for the second or subsequent offense, as well as an appropriate administrative penalty, the amount of which is to be determined by the DHS. However, a group home licensee will not be subject to penalties or other disciplinary action for failing to comply with the bill's requirements if the group home licensee establishes, through documentation or otherwise, that EMDs were installed and being utilized in the group home on the bill's effective date, and that the group home is, therefore, exempt from compliance with the bill's provisions related to the placement of EMDs in unmonitored areas. The Commissioner of Human Services, in consultation with the assistant commissioner of the DDD, will be required to annually report to the Governor and Legislature on the implementation of the bill's provisions. The Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families will similarly be required to include, in each of the ombudsman's annual reports, a section evaluating the implementation of the bill and providing recommendations for improvement. In addition, the bill requires the DDD, within five years of the bill's effective date, to submit a written report that: 1) identifies best practices for the installation and use of EMDs under the bill; 2) identifies best practices and provides recommendations regarding the obtaining of informed consent for electronic monitoring under the bill; and 3) provides recommendations for the implementation of new legislation, policies, protocols, and procedures related to the use of EMDs in group homes. This bill is named in honor of Billy Cray, an individual with a developmental disability who, in 2017, at 33 years of age, was unfortunately found dead in the group home in New Jersey where he resided.

Subject

Health, Human Services and Senior Citizens

Sponsors (2)

Senator Gopal and Senator Madden

Last Action

Introduced in the Senate, Referred to Senate Health, Human Services and Senior Citizens Committee (on 08/03/2020)

Full Text of Bill A4013

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. This act shall be known, and may be cited, as "Billy Cray's Law."

2. As used in this act:

"Authorized representative" means a group home resident's court-appointed guardian of the person or, if there is no guardian of the person, the person who holds a valid power of attorney or is otherwise legally authorized to act as the representative of the group home resident for the purposes of making decisions related to the resident's care and living arrangements. "Authorized representative" does not include a caregiver or any other person who is employed or contracted, on a paid or unpaid basis, by the group home licensee.

"Common areas" means the living areas, dining areas, entrances, outdoor areas, stairwells, and any other areas within a group home, except bathrooms, which are commonly and communally accessible to all residents and are not dedicated for private use by a particular resident.

"Division" means the Division of Developmental Disabilities in the Department of Human Services.

"Electronic monitoring device" means a camera or other electronic device that uses video, but not audio, recording capabilities to monitor the activities taking place in the area where the device is installed.

"Group home" means a living arrangement that is licensed by the division and is operated in a residence or residences leased or owned by a licensee, which living arrangement either provides the opportunity for multiple adults with developmental disabilities to live together in a home, sharing in chores and the overall management of the residence, or provides the opportunity for a single adult with developmental disabilities and extreme behavioral difficulties to live more independently while receiving full-time care, and in which on-site staff provides supervision, training, or assistance, in a variety of forms and intensity, as required to assist the individual or individuals as they move toward independence. "Group home" does not include a living arrangement that is dedicated for use by children with developmental disabilities.

"Licensee" means an individual, partnership, or corporation that is licensed by the division and is responsible for providing services associated with the operation of a group home.

"Private room" means the private bedroom of a group home resident.

"Private single occupancy room" means a private room that is occupied by only a single group home resident.

"Private double occupancy room" means a private room that is occupied by two or more group home residents.

3. a. A group home that does not have electronic monitoring devices already installed in the group home's common areas shall be required to install electronic monitoring devices in those common areas, upon the collective request of the residents and the residents' authorized representatives, if all of the residents of the group home and their authorized representatives agree to have such electronic monitoring devices installed and expressly consent to the installation and use of such devices. A licensee shall not require current residents to consent to the installation and use of electronic monitoring devices in the common areas as a condition of their continued residency in the group home. Each licensee operating a group home that does not have electronic monitoring devices already installed in the common areas shall:

(1) within six months after the group home adopts an internal electronic monitoring policy pursuant to section 5 of this act, take affirmative action to determine whether the residents of the group home and their authorized representatives want and consent to have electronic monitoring devices installed and used in the group home's common areas pursuant to this section; and

(2) annually provide written notice to all residents and their authorized representatives informing them of their right to request the installation and use of electronic monitoring devices in the group home's common areas, as provided by this section.

b. A group home that installs and uses electronic monitoring devices in its common areas pursuant to the agreement, request, and consent of the residents, as provided by this section, shall:

(1) require each person employed by the group home to provide express written consent to the use of the electronic monitoring devices in the group home's common areas, as a condition of the person's employment;

(2) ensure that a prominent written notice is posted at the entrance and exit doors to the home informing visitors that they will be subject to electronic video monitoring while present in the home; and

(3) ensure that, in the future, the group home only allows residence by those individuals who consent to the ongoing use of electronic monitoring devices in the group home's common areas.

c. An individual's refusal to agree and consent to the use of electronic monitoring devices in a group home's common areas shall not be used as a basis to prevent the timely placement of the individual in appropriate housing without surveillance.

d. Any electronic monitoring devices installed pursuant to this section shall be unobstructed and recording at all times, and any recordings produced by the devices shall be retained by the program for a period of 45 days. Each licensee shall inspect the devices, and shall document the results of each inspection, on a weekly basis.

e. The Department of Human Services shall annually conduct an on-site device inspection at each group home in order to ensure that any electronic monitoring devices installed in the common areas are functioning properly, as required by subsection d. of this section. The department may elect to conduct the on-site device inspection required by this subsection as part of the broader inspection of each group home that it is required to perform under section 8 of P.L.2017, c.328 (C.30:11B-4.3).

f. Nothing in this section shall be deemed to prohibit a group home licensee from installing and utilizing electronic monitoring devices in the group home's common areas, pursuant to the group home's internal policies, in cases where the group home's residents have not submitted a collective request for such monitoring.

4. a. A group home for individuals with developmental disabilities shall permit electronic monitoring devices to be installed and used in a resident's private room, as provided by this section, for the purposes of monitoring the resident's in-room care, treatment, and living conditions. Each licensee shall:

(1) within six months after the effective date of this act, and annually thereafter, provide written notice to all residents, and to their authorized representatives, informing them of their right to install and use electronic monitoring devices in the residents' private rooms, as provided by this section, and articulating the notice requirements that are to be satisfied, pursuant to subsection b. of this section, before an electronic monitoring device may be installed and used in a private single occupancy room, and the consent requirements that are to be satisfied, pursuant to subsection c. of this section, before an electronic monitoring device may be installed and used in a private double occupancy room;

(2) ensure that reasonable accommodations are made, as necessary, to enable the authorized use of electronic monitoring devices in private rooms, as provided by this section; and

(3) provide written notice to the relevant resident, or the resident's authorized representative, of any applicable installation or building construction requirements or restrictions with which the resident must comply when installing and using an electronic monitoring device in the private room. Such notice shall be provided within 10 days after the licensee receives notice of the resident's intent to install electronic monitoring devices in a single occupancy room under subsection b. of this section or within 10 days after the licensee receives a resident's request for electronic monitoring of a double occupancy room under subsection c. of this section.

b. (1) The installation and use of electronic monitoring devices in a private single occupancy room: (a) shall be noncompulsory; and (b) may be done by the resident or the resident's authorized representative, at any time, following the resident's provision of notice to the licensee pursuant to paragraph (2) of this subsection.

(2) Any person who wishes to install and utilize electronic monitoring devices in a resident's private single occupancy room shall provide the licensee with a written notice of intent at least 15 days prior to installation of the devices, and shall comply with any installation or building construction constraints that are identified by the licensee in the notice that is provided to the resident pursuant to paragraph (3) of subsection a. of this section.

(3) Any resident who provides a notice of intent to install electronic monitoring devices in a private single occupancy room, or who so installs such devices, shall be deemed to have implicitly consented to electronic monitoring in the private room.

c. (1) The installation and use of electronic monitoring devices in a private double occupancy room shall: (a) be noncompulsory; (b) be conditioned upon the licensee's receipt of written consent to such monitoring from all roommates of the resident who is requesting the monitoring, or from the roommates' authorized representative, as appropriate; and (c) to the extent practicable, protect the privacy rights of all roommates of the resident who is requesting the monitoring.

(2) The roommate of a resident who requests electronic monitoring of a double occupancy room, or the roommate's authorized representative, may place conditions on his or her consent to the use of electronic monitoring devices within the private double occupancy room, including conditions that require the electronic monitoring devices to be pointed away from the consenting roommate at all times during operation or at certain specified times. The roommate's consent to electronic monitoring, and any conditions on a roommate's consent that are established pursuant to this paragraph, shall be memorialized in an electronic monitoring agreement that is executed between the consenting roommate and the resident who requested the monitoring, or between their authorized representatives, as appropriate. The licensee, either through its own activities, or through the activities of a third party, shall ensure that the conditions established in the agreement are followed.

(3) Each resident, or the authorized representative thereof, who wishes to install and use an electronic monitoring device in a double occupancy private room, shall file with the licensee: (a) a signed form, developed by the division, formally requesting and giving the resident's express consent for the installation and use of one or more electronic monitoring devices in the double occupancy room; and (b) a copy of the electronic monitoring agreement that has been executed between the resident and the resident's roommate pursuant to paragraph (2) of this subsection, or, if the roommate or the roommate's authorized representative has refused to consent to electronic monitoring of the private room, a copy of the consent declination form that has been signed by the roommate or the roommate's authorized representative.

(4) The installation and use of electronic monitoring devices in a private double occupancy room shall be done in compliance with any installation or building construction constraints that are identified by the licensee in the notice that is provided to the resident pursuant to paragraph (3) of subsection a. of this section.

d. If a resident's roommate or the roommate's authorized representative, as appropriate, refuses to consent to the installation and use of an electronic monitoring device in a private double occupancy room, or if the licensee is unable to ensure compliance with the conditions on such installation and use that are imposed by a consenting roommate or the roommate's authorized representative in the agreement executed pursuant to paragraph (2) of subsection c. of this section, the licensee shall, within a reasonable period of time, and to the extent practicable, transfer the resident requesting the installation of the device to a different private room in order to accommodate the resident's request for private monitoring. If a request for private monitoring cannot be accommodated, the resident or the resident's authorized representative may notify the division, in which case, the division shall make every reasonable attempt to timely transfer the resident to a group home that can accommodate the request.

e. A licensee shall not refuse to admit an individual to a group home, and shall not transfer or remove an individual from a group home, except as otherwise provided by subsection d. of this section, on the basis that the individual, or the individual's authorized representative, has requested electronic monitoring of the individual's private room, as authorized by this section.

f. A licensee shall ensure that a prominent written notice is posted on the entry door to any private room wherein electronic monitoring devices are installed and used pursuant to this section. The notice shall indicate that an electronic monitoring device has been installed in the room and that visitors will be subject to electronic video monitoring while present therein.

g. All of the costs associated with installation and maintenance of an electronic monitoring device in the private room of a resident shall be paid by the resident who requested the monitoring or by the authorized representative thereof.

5. a. (1) Within 90 days after the effective date of this act, the division, in consultation with the Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, the New Jersey Council on Developmental Disabilities, and the group home provider community, shall establish and publish guidelines for the development of internal policies pursuant to this section.

(2) Within 180 days after the publication of guidelines pursuant to paragraph (1) of this subsection, each licensee shall develop and submit to the division a written internal policy specifying the procedures and protocols that are to be used by facility staff when installing and utilizing electronic monitoring devices as provided by this act.

b. An internal electronic monitoring policy established pursuant to this section shall:

(1) describe the procedures and protocols that are to be used: (a) when obtaining consent from residents and facility staff for the use of electronic monitoring devices in a group home's common areas, as provided by section 3 of this act; and (b) when obtaining consent from residents and roommates for the use of electronic monitoring devices in a private double occupancy room, as provided by subsection c. of section 4 of this act;

(2) describe the procedures and protocols that are to be used in the review of footage recorded by electronic monitoring devices in the group home's common areas. The procedures and protocols adopted pursuant to this paragraph shall, at a minimum, reflect the requirements of subsection c. of this section; and

(3) identify the persons who will have access to footage recorded by electronic monitoring devices installed in the group home's common areas and private rooms, and the circumstances under which recorded footage will be subject to review by such persons.

c. Whenever a licensee receives notice about a complaint, allegation, or reported incident of abuse, neglect, or exploitation occurring within the group home, the licensee shall forward to the division, for appropriate review, all potentially relevant footage recorded by electronic monitoring devices in the group home's common areas.

6. a. The division shall:

(1) develop, and provide to each licensee, consent forms that are to be filled out and signed by individuals who consent to or request electronic monitoring under section 3 or subsection c. of section 4 of this act, and consent declination forms that are to be filled out and signed by individuals who refuse to consent to such electronic monitoring; and

(2) develop, and post on its Internet website, standardized notice of intent forms that a group home resident and the resident's authorized representative may elect to use when providing a licensee with a notice of intent to engage in electronic monitoring of a private single occupancy room, as required by subsection b. of section 4 of this act.

b. Consent forms and consent declination forms filed under section 3 or subsection c. of section 4 of this act and notices of intent filed under subsection b. of section 4 of this act shall be retained by the licensee for a period of time to be determined by the division.

c. When seeking to obtain consent from residents for electronic monitoring, as required by this act, a licensee shall comply with best practices that apply to professional interactions or communications being undertaken with persons with developmental disabilities and particularly, with those persons who have difficulty with communication or understanding.

d. The division may establish additional consent or consent declination requirements, for the purposes of this act, as deemed by the division to be necessary.

7. Notwithstanding the provisions of this act to the contrary, if, as of the effective date of this act, a licensee has already installed and is utilizing electronic monitoring devices in a group home's common areas or private rooms, the licensee: may continue to utilize the devices so installed, in accordance with the licensee's written internal policies; shall not be required to remove the devices from service; and shall not be required to comply with the provisions of this act in order to continue utilizing the previously-installed devices. However, to the extent that a group home's common areas or private rooms do not contain electronic monitoring devices on the effective date of this act, the licensee shall comply with the provisions of section 3 and 4 of this act, as applicable, when installing and utilizing new electronic monitoring devices in such unmonitored areas.

8. a. Any licensee that fails to comply with the provisions of this act shall be subject to a penalty of $5,000 for the first offense and a penalty of $10,000 for the second or subsequent offense, to be collected with costs in a summary proceeding pursuant to the "Penalty Enforcement Law of 1999," P.L.1999, c.274 (C.2A:58-10 et seq.), as well as an appropriate administrative penalty, the amount of which shall be determined by the division.

b. A group home licensee shall not be subject to penalties under this section, or to any other disciplinary action, for failing to comply with the requirements of section 3 or 4 of this act, as applicable, if the group home licensee establishes, through documentation or otherwise, that electronic monitoring devices were installed and being utilized in the group home's common areas or private rooms, or both, as of the effective date of this act, as provided by section 7 of this act, and that the group home is, therefore, exempt from compliance with the requirements of section 3 or section 4 of this act, as appropriate.

9. a. Within five years after the effective date of this act, the division shall prepare and submit to the Governor, and, pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1), to the Legislature, a written report that:

(1) identifies best practices for the installation and use of electronic monitoring devices under this act;

(2) identifies best practices and provides recommendations regarding the obtaining of informed consent for electronic monitoring, as provided by this act; and

(3) provides recommendations for the implementation of new legislation, policies, protocols, and procedures related to the use of electronic monitoring devices in group homes.

b. The Commissioner of Human Services, in consultation with the assistant commissioner of the division, shall annually prepare and submit to the Governor, and, pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1 et seq.), to the Legislature, a written report describing how this act has been implemented in the State. Each annual report shall include, at a minimum:

(1) a list of group homes that are currently using electronic monitoring devices in the common areas;

(2) a list of group homes that have not installed electronic monitoring devices in the common areas;

(3) to the extent known, a list of group homes that have failed to install and use electronic monitoring devices in the common areas upon the request of the residents, as provided by section 3 of this act, despite the licensee's receipt of uniform resident consent authorizing such monitoring, and an indication of the penalties that were imposed under section 8 of this act in response to such failures;

(4) a list of group homes that are exempt from compliance with the provisions of section 3 or 4 of this act, as provided by section 7 of this act;

(5) an indication of the number and percentage of private single occupancy rooms where electronic monitoring devices are installed and used, as provided by subsection b. of section 4 of this act, and the number and percentage of private double occupancy rooms where electronic monitoring devices are installed and used, as provided by subsection c. of section 4 of this act; and

(6) recommendations for legislative, executive, or other action that can be taken to improve compliance with the act's provisions or otherwise expand the consensual use of electronic monitoring devices in group homes.

c. The Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families shall include, in each of the ombudsman's annual reports prepared pursuant to section 3 of P.L.2017, c.269 (C.30:1AA-9.3), a section evaluating the implementation of this act and providing recommendations for improvement.

10. The Commissioner of Human Services, in consultation with the assistant commissioner of the division, shall adopt rules and regulations, pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), as may be necessary to effectuate the provisions of this act.

11. This act shall take effect on the 90th day following the date of enactment.

Daring a grocery trip with a profoundly autistic son

A mom must become a “special forces counter-insurgency specialist” to attempt some errands.

By Leanne Morphet

It's been about two and a half months since I dared venture to go into the store with ZMan. Yesterday, he asked so nicely to go, so I once again channeled my inner Brené Brown, chose to live bravely, and did a trip at 5:05 (yes, the start of after work rush hour) to Wally's World.

So what necessitates these feelings of not wanting to bring my beautiful boy into a store? My child exhibits aberrant and challenging behaviors that seem to come out of nowhere, frequently manifesting themselves at stores, culminating in various forms of (usually mild) property damage.

The current terminology we use to label the most prominent of these challenging behaviors is "dumping." Zach is not throwing with force, nor trying to break these items that he "dumps." The objects of these behaviors range in shape, size and form from paper bags (the most innocuous of things to dump) to eggs (who can forget the Great Tops Christmas Eve Egg Break of 2018) to a one-time encounter (thankfully) of a shelf of ceramic mugs at Michaels.

When I am on one of these trips with Zach — I am nothing short of a special forces counter-insurgency specialist, coming up with a comprehensive plan to simultaneously defeat and contain the behaviors and address its root causes.

This means I have had to cultivate a strategy to include determining if he is about to have an episode, informing those around me what is happening, handling any needed compensation for any irrevocable property damage, and, of course, all while having to dynamically develop a clear exit strategy. A true balancing act when contemplated solo — as I now do as a single parent.

We enter the store, I then consider every environmental factor we encounter filtered through what I understand of his specific sensory profile of what may cause him distress or undue attention, which seems to help, but certainly not always predict when he is ready to strike, and always ready for me to counter strike if he should decide or react to these things.

This is no time for Leanne to be doing the family grocery shopping — one distraction of a special on Baby Bella Mushrooms for Momma and *BAM*, Zach could be found throwing a cantaloupe (midfield if we were out at the stadium) clearly into the cruciferous vegetable section of the produce aisle.

The stunned look of our senior citizen shoppers as a bag of oyster crackers is turned into large pieces of fun shaped baked flour confetti in just an instant has sworn me off eye contact of all sorts because the last thing I need to be is distracted by another person's reactions when having to make sure the shrapnel of these episodes is contained and that Zach is safe.

Oh there is so much more to share but I will leave you with this feel-good moment: as I left the store with ZMan pushing the cart to our very sexy minivan — I did the quarterback's touchdown dance in the parking lot and high-fived my boy.

We had left the building and no, nosiree-bob, security was not called. #Victory #HellYeahAutism.

Leanne Boulware Morphet is an autism mom and advocate living in Central New York, and can be found occasionally recording her escapades at indomitablespiritgoddess.blogspot.com.

#AutismAction — LifeTown: A Wonderland for Autism in New Jersey

A community center like no other opens in a state where childhood autism rates exceed 3%.

LifeTown offers life-skills programs, educational opportunities, sports, dance, music, theater and art, job training, and social activities.

By Jonah Zimiles

LifeTown is an extraordinary wonderland located in Livingston, New Jersey. Opened right before the onset of the pandemic, LifeTown is the culmination of a decade of dreams, planning and hard work, fulfilled by the creation of a 53,000 square foot fully inclusive and accessible center where everyone celebrates and experiences life together.  

LifeTown is the brainchild of Zalman and Toba Grossbaum, who run the Friendship Circle, an organization created to pair “typical” and special needs kids together as friends through the engagement in mutually enjoyable and rewarding activities. LifeTown goes beyond the original construct of the Friendship Circle to provide a myriad of exceptional experiences and opportunities for the entire community, and is designed to support individuals with a wide variety of special needs, including severe autism, throughout the lifespan.  

LifeTown offers life-skills programs, educational opportunities, sports, dance, music, theater and art, job training, and social activities. At the heart of LifeTown is its flagship program, “Lessons for Life.” Centered in LifeTown Shoppes—an indoor Main Street with shops, businesses and more—Lessons for Life allows students to practice their classroom lessons through real-world situations. With volunteers playing shopkeeper, banker, supermarket manager and more, students can work on their social skills, money and time management, communication skills and much more.

In 2009, my wife, Ellen, and I opened [words] Bookstore in Maplewood, New Jersey, to provide jobs and vocational training to individuals with autism. We are extremely proud to be among the founders of LifeTown and to have established our second branch on LifeTown’s Main Street. LifeTown has proved to be a great source of joy and training for Daniel, our adult son with autism. Visits to LifeTown have been limited by the pandemic, but we hope that you will come see LifeTown soon. For more information about LifeTown, please see LifeTown.com or email me at jonah@wordsmaplewood.com.

Jonah Zimiles is co-founder of [words] Bookstore and LifeTown, both in New Jersey.

"We want to tell you about our son and the severity of his challenges so you will understand why we support the NCSA comments"

The following letter was sent in response to the call for comments on the proposed HCBS Access Act. We encourage all autism families to submit their comments as well, to HCBSComments@aging.senate.gov, before the April 26 deadline. Details here.

————

To:      The Honorable Senators Hassan, Brown, and Casey, and Rep. Dingell

Re:      Gabler Family Comments on the Discussion Draft of the HCBS Access Act (HAA)
We support comments of the National Council on Severe Autism (NCSA)

Date:   April 19, 2021

Dear Senators Hassan, Brown, and Casey, and Rep. Dingell:

Thank you for the opportunity to comment on the Discussion Draft of the Home and Community Based Access Act. We very much appreciate your efforts to improve the fragmented, difficult-to-navigate system of adult care of people with developmental disabilities. 

We are stakeholders. We have a 24-year old nonverbal son with severe autism. Douglas will require 24-hour care and skilled supervision for the rest of his life. 

We support in full the comments of the National Council on Severe Autism (NCSA). We respectfully request that you accept the recommendations of the NCSA to retain and expand services, facilities, and options for people with severe autism, and we enclose a copy of the NCSA comments with this letter. 

We also want to tell you about our son and the severity of his challenges so you will understand why we support the NCSA comments. 

Douglas is profoundly nonverbal. He cannot communicate anything about his needs, his wishes, or even his state of health. He is very difficult to care for because we never know if he is having a problem. Does he feel sick, tired, hungry, threatened? Has someone treated him badly? What happened today? We never know. You cannot imagine how difficult it is to care for someone when you have no idea of what he is feeling.

Douglas is prone to Self-Injury. This is a devastating behavior that is common among people with severe autism. When he is upset, he will bite his hands, hit himself on the side of his head, or punch himself in the nose. He has given himself black eyes. His hands have been so bitten up that he looks as though he were attacked by a coyote.

Self-violence unfortunately can lead to aggression against others. If he becomes that agitated, he may turn around and start hitting others. We have been hit, bitten, and pinched. Can you imagine how upset a person must be if he feels he has to engage in these behaviors to get his needs met?

Many people are surprised to hear that these behaviors are common among people with severe autism. That is why this group of people needs specialized supervision and a variety of options for their long-term care, as the NCSA comments explain. 

I cannot convey to you how much we fear for our son’s future after our deaths. Douglas is currently doing well because we (his mom and dad) provide “extraordinary care” around the clock, seven days a week. We also provide “informed care” because we have educated ourselves in the scientific principles of Applied Behavior Analysis (ABA), and we know how to maintain his good behaviors and increase his skills with positive reinforcement. 

Many people are surprised to hear that the use of scientific principles of positive reinforcement to increase learning and maintain good behavior is resolutely ignored by the American disabled adult care establishment. This determination to ignore the scientific principles of ABA terrifies us, because Douglas’s behavior would deteriorate within a week to unnecessary lows if he were in a “care” setting that had no tools other than commands, threats, and coercion. He would become violent in response to such a bad environment and would then be subject to abuse and chemical and physical restraints.

Douglas needs the following services in place to have even a chance at a safe and reasonably satisfying life after we die:

•  He must be in a setting that is designed, staffed, and managed by people who are trained in the principles of Applied Behavior Analysis (ABA), and who know how to use all the tools and procedures of that science to maintain his good behaviors and help him learn new skills. Currently it is extraordinarily difficult to access ABA for adults with severe needs.

•  He must be in a residential setting that has the professional skills to serve Americans with severe cognitive, functional and behavioral disabilities, and he needs access to Intermediate Care Facilities. The preferred “community” placement du jour – some isolated apartment with round-the-clock staffing from a constantly changing cadre of $15/hour aides -- would be a disaster for him; he would be beaten up or dead within a week.

Despite the severity of his autism, Douglas is a charming and cheerful young man who loves to go out and have a good time. If you have never met a person with severe autism and would like to meet Douglas, we are nearby, just across the district line. He is currently enjoying an excellent quality of life because of the care we provide, the training we give his aide, and the efforts we make to get him involved in activities that he enjoys. We desperately hope his quality of life will continue after we die. 

Once again, please come and visit. We can even bring him to you. He loves to ride the Metro.

Thank you for your time and attention. Thank you for learning about Douglas and the reasons we support the NCSA comments, and please, please call if you have any questions.

Sincerely,
Martha Gabler                                                                   
Mother and Legal Guardian of Douglas Gabler                     

Enclosure: Comments of the National Council on Severe Autism (NCSA), also online at https://www.ncsautism.org/blog//ncsa-comments-on-the-hcbs-access-act-proposal

#AcceptThis: Three Terrible Truths about Autism

Autism is a topic obscured by layers of myth, ideology, and delusion. To make progress, what we really need is not acceptance, but ACTION. That is, action based on reality.

By Jill Escher

Some are calling April “Autism Acceptance Month.” Okay, I’m not sure why we should be so accepting of a devastating disorder that plunges ever-growing numbers of individuals and families into chaos, dysfunction, dependence and poverty, but hey, I can play this game too. 

If we are to “accept” autism, we should also be willing to strip away the nonsense — All with autism can gain competitive employment! Autism’s always been here but hiding under other labels! Autism is a gift! — and accept its painful truths. While Autism Month inanities endlessly pop up whack-a-mole style, I’ll discuss just three of the realities that require our full acceptance if we are to make true progress.

Terrible Truth #1: Autism is a scorching, catastrophic epidemic

It has become something like a religious dogma to blame autism’s explosive numbers on cultural factors like awareness and diagnostic shifts. Even USA Today recently reiterated the “nothing to see here” mantra in a sloppy piece (understandably) intending to refute the vaccine myth. While it’s obvious that vaccines have nothing to do with autism, it is equally true — and the evidence is painfully overwhelming — that we are nonetheless experiencing an unprecedented and torrential increase in serious neurodevelopmental pathology in our children.

The autism numbers are so horrific — edging toward 3% of all U.S. children, with no plateau in sight, up from .0466% in the 1960s according to a massive study of 30,000 children. That study found 21% of the 1960s autism cases had IQs in the normal range, and that if they used a more expansive definition including those with childhood schizophrenia and similar, the rate would have been .066% — nowhere near the 3% we’re seeing today in states like New Jersey and California. 

Prevalence of strictly defined autism has skyrocketed in California’s Department of Developmental Services system, up about 3,700% over 34 years.

A new report on autism in California’s developmental services system (DDS), shows that strictly defined autism cases have climbed about 4,000% over the past three decades, with prevalence growing about 11% per year. About 1.5% of California’s 7-year-old children now have strictly defined autism. The special education data from that state suggests the broader definition autism is likely about double that.

Research has found that 59% of children diagnosed "not autistic" in the 1980s would meet today's criteria for ASD. Ok, I’ll take that, sure. Let’s attribute 59% of caseload growth to diagnostic modifications. Hey, let’s make it 100% just to be safe. What about the other 3,900%? Furthermore, repeated examinations of the DDS data have failed to show the caseload growth resulted from awareness, broadening diagnostics, or other factors like immigration. There is not an iota of evidence that our California DDS system has missed hordes of eligible autistic adults.

The CDC recently reported that in 2016 about 5% of all 8 year-old boys in New Jersey have autism, a horrific number that should send shockwaves around the country. And a new study has indicated that about 9% — 9%!!! —of all 8 year-olds in that state’s largest suburban school district have autism. Let me guess — even as special ed classes overflow with children with obvious learning and behavioral dysfunction we will continue, with no basis whatsoever, to blame diagnostic shifts.

Listen, part of me gets it. No one wants to feed the ridiculous antivaxx movement with alarming reports about ever-increasing prevalence. And who wouldn’t prefer a fairytale that autism is a benign difference rather than a serious disorder of brain development and behavior?

But unfortunately, no matter how we may try to justify the numbers with fluffy neurodiversity fantasies, the data are clear and unambiguous — we are suffering a monstrous epidemic, even if we don’t yet understand the causes of the dysregulated brain development at the core of autism. The disastrous long-term repercussions for our families and our society can hardly be fathomed.

Terrible Truth #2: Our country remains utterly unprepared for the tsunami of dependent young autistic adults

As we wallow in the toxic mudbath of epidemic denialism, we are squandering our pragmatic and moral imperative to invent an entire new system of supports for this unprecedented population of adults who cannot care for themselves. Instead of accepting reality, the popular refrain among mainstream advocates is that the answer is simple … drumroll please … “inclusion,” and to “living independently in the community”!

Ah yes, the Inclusion Delusion. Of course we want all people with disabilities to be free from discrimination and have as much access as possible to jobs, housing, and community activities. But here I borrow the immortal words of my late great friend Feda Almaliti, discussing her severely autistic son Muhammed (who perished with her in a house fire last year):

“I’m a realist, and Muhammed will never live independently in the community and I’m never going to be the next Beyoncé. So, if inclusion is the only answer for Muhammed, his future will look like today: isolated inside our house, with nowhere to go.”

Let’s get real. Inclusion is a soggy little band-aid on a gaping wound for most adults with severe autism. What they need most is a robust system of programs and supports catering to their wide variety of needs, along the full continuum of care. Instead, mainstream disability advocates routinely denounce autism-friendly programs and housing as “isolating” while promoting metrics that are utterly irrelevant to the person’s actual needs, well-being and quality of life.

While I would not suggest we need “Institutions” in the classic sense, I have no doubt we a vast network of “institutions” (small i) to cater to the growing needs. By these “institutions” I mean stable, strong nonprofits — I call them Essential Care Nonprofits — and other organizations that can provide wrap-around lifespan care across a wide array of settings. Think of the YMCA, Harvard University, Goodwill. These are all “institutions” serving important social needs, per the dictionary definition of a “significant organizations in a society or culture.” Where are the institutions capable serving the lifespan needs of the new throngs of severely disabled autistic adults? We must invent them, and fast.

Terrible Truth #3: Autism research, for all its blips of progress, has been a miserable failure

As a major proponent of autism research, this is a weird thing for me to say. But, honestly. What do we have to show for two decades of intensive research? Not much. Precious little understanding of causes, despite some nice progress in understanding neurobiological phenomena. No meaningful advances in terms of prevention. A bit of marginally helpful interventions. And pretty much the same basket of medical therapies we had when we started.

People might say, “But we’ve learned autism is genetic!” This is one of the nuttiest myths in autism. If you read the literature (as I do, obsessively), you will see that emphatically research has found autism is not genetic in any classic sense. Only about 10-15% of cases can be explained by genes, and a majority of those are not inherited from parents, but rather arise from newly occurring mutations. Plus a lot of those cases are syndromes that most people don’t really consider as autism as the primary diagnosis. Genetic research has also done nothing to translate into therapies. As Bryna Siegel, PhD has remarked in her book The Politics of Autism, the vast sum poured into genetics research “is unlikely to help any child with autism alive today.”

Then people might say, “But autism is strongly heritable — look at the heritability studies and recurrence rates among siblings!” This is indeed true. But there is no reason to think all this heritability has anything to do with common genes handed down through the generations. Instead, it is becoming increasingly clear that heritability can be the result of modern disruptions to the parental germline, something I have written about extensively in the scientific literature, for example here. But this topic remains sadly off-radar of mainstream autism labs, which seem intent on hunting down nonexistent or ultra rare variants of marginal relevance.

More importantly, we have seen little progress in terms of meaningful therapies. While behavioral approaches can be helpful in a subset of children and adults, particularly when it comes to making gains in circumscribed areas of pragmatic functioning, it is also routinely overhyped, particularly with regard to its efficacy in early intervention. Not a single medication has been seen to improve the core symptoms of autism (of course, it seems impossible to undo flawed hard-wiring of the brain). Cannabis is promising as a treatment for symptoms such as anxiety and aggression, but there is still little research and the medical establishment remains largely resistant. 

The current movement to “accept autism” defies all logic and sense of moral responsibility to our children and future generations. Acceptance is like throwing a beach pail of cool water on the inferno of troubles that lay ahead of us. Instead we need ACTION, a robust master plan for autism — to finally root out its causes, to find pathways toward prevention, to develop effective therapeutics and high quality lifespan care options. 

Jill Escher is President of the National Council on Severe Autism, a research advocate, a low-income housing provider for adults with autism, and the mother of two children with severe forms of autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

#AutismAction: My Trick to Teaching Pill Swallowing

With severe autism, even small victories can make a huge difference.

By Leslie Lussier

How many of us spend part of every day crushing pills, mixing the dust into various foods, and hoping that our kids get at least most of the medicine they need? Pill swallowing is a critical skill for our kids, but can be hard for many of them to learn -- we worked on it with my son for many years, on and off. The secret to our success was mung beans.

Our struggle was finding a pill substitute to use for training. We had tried tic tacs, m&ms and other small, hard edibles but they never worked as a pill substitute because my son always recognized them as tasty treats to chew rather than to swallow whole. I then purchased empty gelatin capsules. These capsules were tough to fill with a edible substance like flour but too light and melted on the tongue quickly if used empty.

Mung beans, however, met all the criteria needed for a fake pill. They are small, very hard, edible and not tasty. They come in several sizes, so I was able to find a bean that was very close to the pill we needed him to swallow. And, with the help of the ABA therapists at his school who worked with him daily, he learned how to swallow a pill using the mung bean as the substitute for the pill at school. When he mastered the bean at school, I was able to use the same steps at home, substituting the actual pill for the bean.

Now when a doctor talks to us about medication for our son, we no longer have to ask “does it come in liquid form?” or “can you crush it?” or worry that a crushed pill will overwhelm a spoonful of applesauce or yogurt with a bitter taste. We can give him any medications now, any pills of all size and shapes. A small victory, perhaps — but it has really made our lives easier!

Autism Acceptance Month, Really?

“What types of autism are they accepting?”

By Jason McCarver

As I scroll through my Twitter feed, trying to digest the 
Bullshit propaganda of autism acceptance month. 
I asked myself, would people really accept my son screaming bloody murder 
At 3am? Or being on the porch naked, laughing loudly at midnight?

I wonder what types of autism are they accepting? 
Would they accept my son when he’s in full blown meltdown mode? 
Harming himself?
What about when he’s full blown into an obsession and forgets about everything else?
And gets mad when you try to break him out of it, resulting in violent meltdowns, self harm etc.

The types of autism they’re accepting of, are the types that doesn’t require much care or assistance.
The type that’s quirky and cool online, but also somehow maintains a life offline.

It’s not a fair representation of autism, when the severe and most vulnerable are barely talked about,
Never being celebrated or even aware of their existence.

For a month, once a year, people wear puzzle pieces, buy bumper stickers, watch movies, read articles, talk about their “weird neighbor who’s a little autistic” and that’s the extent of their spreading awareness.

Meanwhile, kids like my son are still struggling,
Parents still fighting for services, crying at night, 
And begging anyone to just listen and understand.

It’s all bullshit,
No one wants to celebrate cleaning up shit for decades,
Constantly repairing walls,
From meltdowns,
Replacing electronics,
Constant time off from work,
Constant doctors appointments and hospitals, etc.

Lately, it seems like the acceptance and awareness, is geared towards a crowd that doesn’t require 
Anything, I mean yeah, it’s easy as hell to accept something that doesn’t require you to do anything.

When it comes to kids like my son who require constant supervision, support, structure,
Constantly needs help with everything.
The accepting part becomes hard, when it starts to 
Truly affect people, it’s not so wonderful, it’s not so cool.
When it starts hurting other people’s 
Pockets with the constant expenses.
They become aware of how much autism really sucks.

Don’t get me wrong, things aren’t entirely one sided.
It’s a lot of awareness and advocating going on by parents like myself
Who spend hours and hours trying to get the world to see 
Our kids and understand their needs. It’s never ending and only gets more 
Complicated as our kids get older.

The need for awareness and acceptance 
Means something entirely different for kids like my son.
It means the world has to admit he exist and his needs are important everyday,
Not just a month full of bullshit logos and propaganda stories.

Jason McCarver battles nonsense in the Twitterverse with nuggets of personal wisdom. Follow him on Twitter @jayhood73.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Comments on HCBS Access Act due April 26

Dear NCSA community,

Congresswoman Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH) have released a discussion draft of the HCBS Access Act for stakeholder feedback. The proposal seeks to mandate HCBS in Medicaid to provide critical services, creating national, minimum requirements for home and community-based services, and make it possible to enhance those services and the long-term care workforce. See here for discussion draft text and here for a memo seeking stakeholder input.

We strongly endorse the ending of waitlists for Medicaid disability services (even in the massive price tag may render the bill politically infeasible). However NCSA has expressed strong reservations concerning the proposal’s systematic discrimination against those with severe autism/IDD. Please read our letter here.

We strongly encourage you to submit your own comments before April 26 to HCBSComments@aging.senate.gov. Some points you may wish to consider are below. But please tell your own story and your own concerns — your voice matters and must be heard!

—NCSA Board of Directors

§ Community inclusion is a worthy goal, but not the only goal. Other important objectives are self-determination, choice, quality of life, and access to appropriate amenities, safety measures, and supervision. 

§ “Community services” in reality often means no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover, no therapeutic or nutritional supervision, and high reliance on 911 calls to address crises, often resulting in violence, trauma, incarceration and psychiatric hospitalization

§ Dr. Lee Wachtel, Kennedy Krieger Institute: “Some autistic adults have severe behaviors that cannot be managed in community settings.”

§ Dr. David Mandell, University of Pennsylvania: “Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

§ The proposal relies on vague, euphemistic terms that lack clear definition, i.e., what is meant by “congregate,” “institutional,” “community”? The bill sets the stage for endless battles over terminology

§ The HCBSAA “Advisory Committee” would place veto power in the hands of a few advocates

o  The families of those whose cognitive impairments preclude self-advocacy – and who, importantly, consume the bulk of Medicaid dollars – must be represented 

§ The HCBSAA explicitly excludes the intensive and disability-specific supports needed by many with severe autism

o  Only “supported employment and integrated day services” are included

o  Transportation limited “to facilitate community integration”

o  De facto de-funding of ICFs

o  Ultimately violates the entire concept of “person-centered planning,” the undisputed cornerstone of disability service provision

§ The HCBSAA overlooks the problem of housing access

o  Residential providers for people with I/DD “cherry pick” mildly affected clients

o  Lack of access to housing subsidies like Section 8

o  Risk of eviction to those with dangerous and disruptive behaviors

o  Settings Rule has had a chilling effect on new projects targeting the severely autistic

NCSA comments on the HCBS Access Act proposal

[Please find the PDF of this letter here.]

National Council on Severe Autism
NCSAutism.org

The Senate Special Committee on Aging
G41 Dirksen Senate Office Building
Washington, D.C. 20510
Via email: HCBScomments@aging.senate.gov

April 8, 2021

Re: NCSA comments on the HCBS Access Act proposal

Dear Congresswoman Dingell, Senator Hassan, Senator Casey, and Senator Brown:

The National Council on Severe Autism, an advocacy organization representing the interests of individuals and families affected by severe forms of autism and related disorders, thanks you for this opportunity to comment on the proposed Medicaid Home and Community Based Services Access Act (HCBSAA). We appreciate your concern for the growing numbers of Americans suffering from disabilities, including the burgeoning population disabled by severe forms of autism, a number that has dramatically increased — more than 4,000% — over the past three decades.

The idea of ending waitlists for Medicaid disability services sounds like a dream — it is heartbreaking to see growing ranks of adults with intellectual and developmental disabilities (I/DD) “fall off the services cliff” after high school and into a system so woefully unprepared for them, with very limited and rationed options for programming, housing, or supports. This terrible situation is exponentially worse for young adults with severe autism who possess little to no capacity to care for themselves or earn a living, and whose complex needs often include aggression (e.g., pinching, biting, hitting, kicking), self-injury, elopement, property destruction, extreme rigidity, disruptive behaviors like screaming, throwing and stripping, and comorbid medical conditions such as psychiatric disturbances and epilepsy.

We agree wholeheartedly that dramatic updates to Medicaid are needed, and if the HCBSAA offered person-centered options along the full continuum of care, we would vigorously support it. But unfortunately the current draft is not aimed at that goal; though it may have been unintentional, the draft systematically discriminates against and marginalizes Americans with severe cognitive, functional and behavioral disabilities, and would have the catastrophic effect of shuttering programs designed to serve them, while prohibiting development of desperately needed new capacity. Let us explain:

(1) The proposal is based on myths rather than facts

First, we are concerned that the proposal is founded on a number of myths about disability and disability services.

First, the draft is based on a false assumption that the Medicaid system is riven with an “institutional bias” that keeps adults with disabilities locked away from the community at large. While this may have been true half a century ago, this bias simply does not exist in America today. For example, in our most populous state, California, about 99.8% of residents with autism live in the community, and not in institutions. There is simply no scary “institutionalization” ogre looming in our states, and no need for draconian measures that further narrow and eliminate scarce options for the severely disabled. The steady closure of intermediate care facilities (ICFs) and sheltered workshops — two of the exceedingly few options equipped to serve severely autistic individuals — has already had the devastating impact of depriving individuals of critical options, with the HCBS Settings Rules further restricting appropriate options in some states. The University of Minnesota National Residential Information Systems Project found that while the number of long-term support recipients living with family or in their own homes surged, those living in larger group settings declined dramatically, a decrease of 43% for those in an IDD facility, nursing home or psychiatric facility.

Second, the draft is based on a fiction that any setting labeled as “institutional” must be somehow nefarious, while all settings in the “community” must somehow be benign. But facts tell a different story. Disability-serving settings today have nothing in common with the infamous Willowbrook in New York, while at the same time stories abound of community settings rife with abuse, such as an HCBS group home in the Bronx where staff regularly answered the phone with “Hello, Bronx Zoo,” and where repeated physical, sexual and psychological abuse of the residents was belatedly revealed by a whistleblower. Even the victims’ many trips with unexplained injuries to neighborhood hospital emergency rooms elicited no inquiry or protective action by the doctors and nurses who treated them. To cite another of many examples, a young man in an HCBS setting suffered repeated abuse, was exposed to pornography, was afraid to take off his clothes to shower, was deprived of clean towels and even a bar of soap, and slept on a bare mattress in his dirty street clothes and shoes. While community care can be wonderful it can also be abysmal and deadly, as we saw with the rash of deaths (nearly 1,000) in community services in Georgia following closure of institutions. As Dr. David Mandell, Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, observes, “Today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.”

“Community services” in reality often mean no supervision, no licensing, no consulting medical or nursing personnel, no properly trained staff to handle medical/behavioral crises, high burnout and turnover, no therapeutic or nutritional supervision, and high reliance on 911 calls to address crises, often resulting in violence, trauma, incarceration and psychiatric hospitalization, all delivered by a tattered and fragmented system nearly impossible to navigate. It also can mean a prohibition on necessary safety features and amenities often need by our population, which may include swimming pools, swings, trampolines, sensory equipment, plexiglass over the windows, electrical and plumbing equipment that cannot be ripped out, safety furniture, safe rooms for staff, sound muffling walls and ceilings to prevent noise from bothering neighbors or preventing sensory overload in sensitive clients, line-of-sight building layouts, crash carts, specialized gurneys and bathing apparatus that make the care of clients easier and effective, and more. Further, the HCBS system offers few financial mechanisms to deal with the daily need for repairs and replacement of destroyed property.

Third, the draft is explicitly premised on a false presumption that all, no matter how severely disabled, can be served “in the community” — a presumption not based on fact, and that, puzzlingly, appears to be unrebuttable. While it would be wonderful to believe that all those with severe disabilities can have their needs met in generic community settings, one can easily see this is untrue. Almost every day we hear of adults with severe autism being threatened with eviction due to dangerous or disruptive behaviors, or who are threatened by neighbors who consider them a nuisance, or who are unable to locate qualified caregivers or day programs, or who are raped, abused or neglected in isolated, unsupervised settings where, due to low cognitive and verbal skills, they cannot report their trauma. Even the government’s own research exposes the falsehood of the presumption: recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small dispersed settings that, as Dr. Mandell report “are often not up for the task of caring for individuals with more profound  impairments.” Dr. Lee Elizabeth Wachtel, director of the Neurobehavioral Unit at Kennedy Krieger Institute, has also testified: “Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable.”

Indeed, the Supreme Court, in interpreting the Americans with Disabilities Act in the Olmstead decision, held that “nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings.” Justice Kennedy added that it would be “tragic” if the ADA were interpreted to force individuals “into settings with too little assistance and supervision.” The Supreme Court has recognized that the ADA requires a wide range of facilities to meet the diverse needs and preferences of individuals with disabilities.

Fourth, the HCBSAA asserts there exists “decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.” In fact, there is no good data around this issue at all; there has been not a single study on outcomes and metrics for adults with severe autism across a variety of programs. As Dr. Mandell has stressed, “Right now, our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data” (https://journals.sagepub.com/doi/full/10.1177/1362361317722101). 

(2) The proposal relies on vague euphemistic terms that lack clear definition and set the stage for endless battles over terminology

The express purpose of the HCBSAA is to limit access to institutions, nursing homes or other “congregate settings,” and is built on notions of promoting “community-based” programming. Unfortunately these all-important terms are nearly meaningless, and subject to individual whim and interpretation. What is meant by "congregate settings”? A group home with 2, 3, 4… 12 disabled people? An apartment community serving 2, 3, 4… 50… 100 disabled people? A day program serving 2, 3, 4… 20…50…100 disabled people? A farmstead serving 2, 3, 4… 50… 100 disabled people? A cluster of homes serving 2, 3, 4… 50… 100 disabled people? What is “institutional” or “congregate” is amorphous, undefined and susceptible to the ideologies and whims of advocates or bureaucrats. As a result, these terms could be interpreted broadly, encompassing any group-oriented program with any disability-specific purpose, which would amount to a nightmarish, permanent “no vacancy” sign for adults with severe autism.

Similarly, what is meant by “community”? If there are farms in a community, would residing on a farm be considered “community-based”? If an individual requires disability-specific programming and amenities in his apartment cluster, is that considered “community”? Or is “community” solely defined by generic physical structures and situations preferred by people without disabilities? Unless these terms are clearly defined we can anticipate years, if not decades, of blistering battles over their meaning — and therefore over allowable options for the severely disabled.

(3) The HCBSAA "Advisory Committee" would place extraordinary veto power in the hands of a few advocates

The proposed Advisory Committee is designed to be made of a majority of self-advocates and allies, with a minority (if any) representation from those who lack the capacity to advocate for themselves, and who must rely on parents/guardians/conservators to represent their interests, i.e., almost the entire severe autism population which we represent. A small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals, an idea that is clearly untenable. While of course self-advocates have the right to self-determination, there is no reason they should be handed gatekeeping power over services and supports for all individuals with I/DD and across the broad spectrum of needs and abilities, in contravention of person-centered principles. It is frightening to contemplate such an undemocratic process at the helm of such a massive public benefit program that serves as the very lifeline for countless thousands with severe disabilities.

(4) The HCBSAA explicitly excludes supports needed by many with severe autism and buries person-centered principles under arbitrary strictures

On its face, the bill is grounded on person-centered planning, but this worthy goal is undermined not only by the unforeseeable directives of the Advisory Committee but also by incorporation of the HCBS Settings Rule into statute. Ideally, any law authorizing expenditure of Medicaid dollars would focus on person-centered planning, without erecting unnecessary barriers to service access. The primary question should be, “What arrangement makes most sense for this individual, given his/her desires and needs?” and not “How can we satisfy arbitrary requirements that are irrelevant to the well-being and quality of life for this individual?”

Moreover, it is very concerning that those with severe autism and I/DD seem to be excluded from the express purpose of the HCBSAA, which is to help “individuals attain or retain capability for independence or self-care." Since almost no individuals with severe autism have capacity for independence or self-care, their realities, their lives, are excluded from the goals of this bill.

Indeed, the HCBSAA would only support "supported employment and integrated day services.” What is meant by "integrated" day services? This bill could shutter desperately needed programs serving the severely disabled who are incapable for integrated day services owing to their severe cognitive, behavioral, medical and functional challenges. Similarly, we cannot understand why transportation resources would be limited “to facilitate community integration.” What if severely disabled individuals need transportation for other reasons? Our population often cannot even attend medical appointments without access to adapted vehicles with harnesses staffed with specialized behavior and medical support personnel; eliminating options for transportation for other settings could be life-threatening for those with profound disabilities. Along the same lines, we cannot understand why the bill only supports “Home and community-based intensive behavioral health and crisis intervention services." What about options for site-based, inpatient or specialized services for those with severe behaviors? We can think of no reason to exclude these vital services that are so necessary for the health and well-being of many adults with severe autism.

(5) The de facto de-funding of ICFs punishes the most severely disabled

While the vast majority of adults with severe autism currently reside in the community (mainly with parents) and only a small minority in ICFs, it is critical to retain an ICF option for those who require that level of wrap-around care, either temporarily or permanently. The HCBSAA would for all practical purposes result in the de-funding of ICFs by eliminating the requirement that states cover ICF services if they cover HCBS services for the I/DD population, and by providing that the FMAP for HCBS services would be 100%, a strong incentive for states to eliminate the ICF option. ICFs are a key component of the national safety net, offering intensive, professional therapeutic level of care to the medically fragile and the severely autistic found nowhere else and in the most economical way possible. Just as we would not eliminate the ICU from the hospital, we must not eliminate the ICF option from the array of disability programs. As we have seen repeatedly, HCBS providers often not only refuse services to clients who are too difficult or unprofitable to manage, they generally lack the training, facilities and structure to provide care to the most severely disabled. 

While it eschews services needed by many with profound impairments, the bill also expands the pool of eligibility to those with mild impairments. Under the current law, HCBS is available to people who require an institutional level of care. In contrast, the HCBSAA broadens eligibility to anyone who needs assistance with 2 or more activities of daily living. We are concerned that prior to any relaxation of eligibility standards the HCBS system should first be able to meet the needs of the most severely disabled.

(6) The HCBSAA overlooks the fact that adults with severe autism seldom have access to housing

The bill makes a critical error of assuming that people disabled by severe autism will have places to live "in the community.” This assumption is tragically false. At this time there is almost no public support for providing brick and mortar housing for adults with severe autism. First, private residential providers for people with I/DD are typically allowed to cherry-pick the individuals they serve – and they rarely choose those with severe autism, due to the risks for injury and/or damage, and need for excess staffing and costs. Second, few adults with severe autism (whose income is typically limited to Supplemental Security Income (SSI) of about $700-900 per month) have access to housing subsidies, such as HUD Section 8, that would allow them to reside in “their own home” in the community. Then, even if they have the good fortune to possess a housing voucher, they often cannot find appropriate housing, or face eviction, due to  disruptive and destructive behaviors. Finally, the chilling effect caused by the Settings Rule has seriously threatened the financial viability of new projects intended to serve the severely disabled. Unlike standard housing serving the non-disabled, disability housing that by law must be isolated and dispersed cannot take advantage of crucial economies of scale (both for construction and operation) available to every other segment of our society.

In sum, while we are overwhelmingly grateful for initiatives to eliminate Medicaid waitlists and improve caregiver quality and pay, we are concerned that in operation the HCBSAA could dramatically restrict options for those with severe disabilities, particularly the severe cognitive and behavioral disabilities seen in severe autism. Given the exceptional urgency to fix our broken Medicaid system, we hope that the sponsors will reconsider the current approach outlined in the HCBSAA to more fairly incorporate the needs of the full spectrum of Medicaid-eligible disabilities. 

The National Council on Severe Autism would be honored to participate in a re-drafting of the proposed bill to ensure that the needs of this large and growing sector of the disability community are properly recognized. Many thanks for your courageous work on behalf of Americans with disabilities.

Very truly yours,

Jill Escher
President

#AutismAction: You Can't Do This Alone, by Feda Almaliti

By Feda Almaliti

(The following is an except from a talk the late Feda Almaliti gave at an Autism Society San Francisco Bay Area conference held at Stanford University in 2017. Feda passed away in September 2020 in a house fire as she tried to save her severely autistic son Muhammed.)

Anger has a vulnerable underbelly.

Deep sadness. It’s easy to look at a child with autism and feel empathy for their plight. What gets missed is so much of the time is the experience of the parents. For me, this sadness has taken two forms. First I have had to grieve the loss of the child that I thought I was supposed to have. The sadness that wells up when I realize he will be watching Dora the Explorer for the rest of his life; that he will wake me up at 5am and get into my bed for the rest of my life — and I don’t even want to think about what happens to him after I’m gone.

Then there’s that feeling of powerlessness, those moments early on where I sat on the couch watching Muhammed rock with a vacant stare, not turning his head when I called his name over and over…. Help was out of reach, behind some door. This I don’t want any other parent to have to experience because THIS is an avoidable pain.

The purpose of my anger was obvious to me, but for the longest time I couldn’t figure out the purpose of my sadness. And then it became clear. Sadness is glue — it bonds us together. When I look at another mom and sense her pain, I can’t turn my back, I can’t just walk away. I HAVE to stay. I have to listen. I have to be with her. And when she feels she can’t go on, I have to light the spark in her and keep her fighting, and keep myself fighting too.

There is no way I could have done any of this alone. Every single step of the way I had the support of my fellow autism parents. They cried with me, they laughed with me. I’ve even had one break into my house to check on me when I didn’t pick up the phone for a week.

You see, being together in the sadness of Autism is doable. Being alone in the sadness of Autism is not. Being together in battle is doable. Being alone in battle is not.

There’s the saying that if Muhammed cannot go to the mountain then the mountain must come to Muhammed. Well in essence that true for ALL of our children.

Everybody has a role in this movement.

The mountain is big and it’s hard to move.

YOU ARE NOT ALONE.

Feda Almaliti was the founding Vice President of NCSA. Learn more about Feda here.